[starsong]

Hi everyone, I'm new here, as you can guess. I've had epilepsy all my life, but was only diagnosed at age 19 with frontal lobe seizures. Now, here's the kicker. The diagnosis was questioned later by a dumdum neuro who thought they were bs for attention, so stuffed me in a monitoring unit for a week. That was the week from hell. They caught almost 40 events in the first two days and said there was nothing wrong. But my stats changed every time and the episodes were consistent. Any and all triggers i.e artificial sweeteners worked consistently whether I'd been told or not, as they thought it might be psychosomatic, or whatever they wanted to call it. They finally did say yes, it's epielpsy, but we can't capture it here. The spikes don't match the symptoms. As is common with FLE. I also have a botched back surgery from 2006 where I fell from about 20 feet and broke l2 and possibly a few other vertebrae, but only l1-l3 were fused and fixed with rods and screws. Two of the screws are broken and one of those two is backing out. I'm also blind in one eye and nearly so in the other from over oxygenation at birth, as I was 2.5 months early. I'm currently on trileptal 300/3x a day, and lyrica that I'm taking myself off of for good reason. I swell so bad when I'm on it I can't walk on my feet nor use my hands as they are stiff from the swelling. It also causes me to become so badly exhausted with just a few steps of work that we wonder if there isn't something else going on, but the breathlessness and coughing eased once I stopped taking it for a day or two. I'm also on tramadol and vicodin prn as well as tizanidine half-hearted prn, i.e I mostly take it at night as it's one wonderful anticonvulsant and a great pain med even though it's only a muscle relaxant.
I hope to laughing, loving and sharing with all of you. Thanks for taking the time to read this, and I hope you have a comfortable day.

[Rrae]

Welcome to NT!

You've found a great place for support and understanding. I see you've found your way to the Epilepsy forum. Lots of great people there who will give you good input. Make yourself at home here - this is a very down-to-earth place.

Just holler if you have any questions or need help finding your way around.

It's great that you are here!

Caring,
Rae